Recovery Tip #9, pneumonia, bronchitis, and kids

I think it is recovery tip #9. It could be 10 or it could be 8, but I’m pretty sure it is #9. Anyway, it’s one of those.

Those of us with Burkitt’s Lymphoma have discovered that there is a big immunodeficiency component in this flavor of Non-Hodgkin’s Lymphoma (NHL). It has been my experience that this immuno-thing is kind of chronic and seems to stay with you long after the last dose of chemo.

Since I finished chemo I have had to battle two really bad cases of bronchitis. One required extensive antibiotics and the other a top-off of Intravenous immunoglobulin (IVIG). So it probably is a good idea to do a couple of things.

1.      Protect yourself from infected people and avoid kids. I think kids are germ machines sent to test us with their cuteness.

2.      Find out what the rules are from your insurance company for IVIG treatments. That IVIG stuff is a lifesaver.

3.      Get inoculations. Most insurance cover them and they could keep you alive.  

No kidding. This upper respiratory stuff is a big deal and you need to be cautious and leaning forward.

Guess that’s it!

Peace

The Pushup King Of Recovery Exercise

Well, I’m back to give more questionable advice for lymphoma survivors. Below are some general guidelines for exercise as it relates to platelet counts. It’s pretty good stuff and should keep you out of trouble – at least as far as muscle tears and bruising goes.

I have tried everything over the past four years to get the lean muscle mass back I lost after my chemo battle. I’ve biked, I’ve run, I’ve walked, and I’ve even jump roped (an incredibly bad thing to see). As much as I tried to avoid it, it turns out – for me -- that the only sure way to build a foundation for getting back in shape is – and I hate to say it – the pushup.

The painfully boring pushup – it seems to me – is the king of all recovery exercises. It works just about all the major upper body muscle groups (including stomach). The variations are enormous, the results are undeniable, and they require no special equipment. For those of us who’ve dodged the pushup this link gives 82 verities from beginner to crazy.

http://www.livestrong.com/article/339420-exercise-low-platelet-count/

ExerciseRecommendations

The Leukemia/Bone Marrow Transplant Program of British Columbia provides specific exercise recommendations for different levels of low platelets. Limit all activity when the count is less than 15,000. When platelets are 15 to 20, you may do gentle exercising that does involve resistance. This could include exercising while sitting or standing, gentle stretching or taking an easy walk. A platelet count of 20 to 40 allows you to use some light resistance, such as weights or latex bands. You can walk faster and climb stairs. At platelet levels of 40 to 60, add exercises such as stationary cycling and golfing. Higher levels, that are still considered too low, allow for aerobic exercise such as biking and jogging, but require wearing proper gear and taking caution against injury.

Work and Misplaced Loyalty

When I first returned to work, I was so grateful that my boss held my job, I pledged undying loyalty. It felt right to do it and I wish I hadn’t.

It’s not that my boss is bad, or my job is bad, or anything like that, it is just that commitments made after treatment should fall into a certain category. There should be a year – maybe two -- withdrawal policy on such commitments.

It kind of goes like this, “I am so thankful for not losing my job, I will gladly stay here forever, if that’s what you need dear boss.”

The boss if he/she has any mettle in their spins should retort, “Easy there hero. You’ve been through a lot and you may feel different later. Remember, I kept you to do work, not because I’m a nice guy/gal.”

But bosses won’t do that. They’ll take you up on your offer and expect you to keep your word.

But what really happens is the patient in remission – that’s right patient – is in no condition mentally, spiritually, or physically to make that kind of commitment, but the patient does anyway (even if it is unspoken).

But. The workplace is unkind, unforgiving, and ruthless. Some employers may be kind at first, but once your cancer fades into their background, they aren’t interest in your neuropathy, physical limitations, or side any effects you may still be experiencing.

Once Maslow’s hierarchy of needs kicks in, the you may start resenting the commitment they made; you may feel like they are being taken advantage of (excuse the ending of this sentence). You get your ambition back, you get your drive back, and you get your desire to do well for your family back. But it’s too late. Your last name is “He Had Cancer.”

You know. “That’s Bill,” they’ll say. “He Had Cancer.”

And pretty soon promotions go to the next guy and eventually the patient will hear these words (or some form of them), “You survived cancer; this (fill in the blank) is nothing compared to that.”

And there you are; your thankfulness and loyalty tossed across the employee parking lot, but you’re stuck. You’re stuck because you drifted far from the lessons cancer taught you; you’re stuck because the bills keep coming, and you forgot what it was like to almost die; and you’re stuck because you were loyal when you should have been selfish.

That’s just what I was told. It never happened to me.

My Four Year Anniversary

I want to tell you a story; it’s a true story.

It was about 6:30 p.m. on October 18^th, 2011. I was sitting in my hospital bed, bald head beaming and my wife Kate was sitting in one of the two steel framed hospital chairs next to the bed. I had some chemical dripping into me.

We were tired; it had been a long couple of weeks. I almost died; it was weird.

The cancer ward at Christian Care is 6B. Only the sickest check-in, regrettably many don’t walk out.

My bed was closer to the window while the other bed in the room was closer to the door. In that bed a man was dying, and for reasons unknown to me, it was a complete surprise to his family. They thought he was going to get better, but the entire medical staff – it seemed – knew he wasn’t. The daughter, who worked her cell phone and IPAD all day with dedication and skill of a stockbroker closing a big deal, was able to get a consult for the guy.

Kate and I talked in hushed tones – we had our own problems.

All my blood numbers had finally rebounded and I was staring at another seven—day, 24-hour a day chemo session. It would be seven of eight of the protocol.

From window overlooking the industrial roof of the hospital wing below, the sunset blazed across black roofing giving it an otherworldly burnt orange. It was beautiful and distracting at the same time. You see I was afraid that my doctor would tell me that as long as I was already there, we might as well start round seven.

I had worked out my arguments why I wouldn’t do it, but deep down I knew I would. So Kate and I waited.

The consult for the guy next door – whose name I never learned – began as the oncologist looked him over. It wasn’t good news.

My doctor came in, began the obligatory listening, poking, and thinking. He pulled the curtain separating the two beds, then took the other chair, and turned it around so it was facing us – something he had never done before – and sat down.*

*This part is kind of a blur, but I’ll do my best.

“I want to talk to you,” he said. “You’ve been in remission for a while and every round is getting harder and harder. It’s your decision, but I think we should stop the chemo and see what happens. You might be fine.”

We were stunned. Kate asked a few questions, I asked a couple and then she got up and danced. She truly did. It was beautiful, joyful, and loving. She hugged the doctor and I did too.

“The first thing,” he said. “Is to take this down,” pointing to the bag of whatever it was.”

In the bed next to us the family was getting different news.

My doctor went out, wrote up some doctor stuff and said I’d be going home in a few days as I was still a bit sick from side-effects.

Kate and I went out in the hallway to give the other family some privacy and to just bask in the sudden good news. It somehow seemed impolite to do it while the other family was dealing with such horrible news.

I know the guy in the other bed died. I don’t remember if it was there or he went to hospice. I had a couple of roommates, there one minute and gone the next.

Regardless I am still here. I am at about 90 percent of where I was before I got sick. All-in-all a happy ending. There have surely been bumps, anxieties, and scares along the way, but so far so good.

I only bring this up because this is my four year anniversary.

Bill